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Strengthen the Evidence for Maternal and Child Health Programs

Search Results: MCH Organizations

This list of organizations is drawn from the MCH Organizations Database. Contact information is the most recent known to the MCH Digital Library.


Displaying records 1 through 5 (5 total).

Alstrom Syndrome International (ASI)

Annotation: Alstrom Syndrome International (ASI) provides information, networking, and emotional support for people afflicted with Alstrom Syndrome and their families. It also serves as an information resource for physicians, researchers, and any associated professionals who have an interest in Alstrom syndrome. ASI also promotes and encourages medical research with the hope of determining the cause and finding a cure for Alstrom Syndrome and related diseases. ASI publishes a quarterly newsletter and maintains a listserv for individuals (both professionals and family members) interested in Alstrom Syndrome. Materials are available in Portuguese, German, Italian, Spanish, Swedish, Dutch, Turikish and Japanese.

Keywords: Alstrom syndrome, Medical research, Support groups

American Parkinson Disease Association (APDA)

Annotation: The American Parkinson Disease Association (APDA) funds medical research, organizes support group chapters, and provides information and referral services to patients, their families, and the public. Publications include Be Active, Good Nutrition and Coping with Parkinson Disease, Parkinson's Disease Handbook (in English and Spanish), Speaking Effectively, and a quarterly newsletter. The association also provides materials in Spanish, Italian, Chinese and Japanese languages. The association sponsors conferences. The association's West Coast office is located at 10850 Wilshire Boulevard, Suite 730, Los Angeles, CVA 90024, (800) 908-2732.

Keywords: Medical research, Support groups, Information services, Nervous system diseases, Parkinson disease

Batten Disease Support and Research Association (BDSRA)

Annotation: The Batten Disease Support and Research Association (BDSRA) sponsors research on Batten disease and provides support, referrals, and information to families affected by the disease. Publications include Batten Disease: Neuronal Ceroid Lipofuscinoses and a newsletter. Some materials are available in Spanish, French and other languages. BDSRA also sponsors conferences, training seminars, and workshops.

Keywords: Brain diseases, Batten disease, Medical research, Support groups, Nervous system diseases, Neuronal ceroid lipofuscinoses

Dystonia Medical Research Foundation

Annotation: The Dystonia Medical Research Foundation is a nonprofit organization that works to build awareness of dystonia, a neurological disorder characterized by involuntary muscle spasms that twist the body into painful and disabling postures. The foundation promotes research on the causes of dystonia and sponsors chapters and support groups for people with dystonia and their families. Services to consumers include referrals, publications and reference information. Publications include a newsletter, a quarterly magazine, and pamphlets and age-specific guide books for dystonia families. Audiovisual materials include documentaries, public service announcements on dystonia and a new children's video, I Am Not Dystonia. A catalog is available. Some materials are available in Spanish and French. The foundation sponsors conferences and training seminars.

Keywords: Dystonia, Medical research, Support groups, Information services, Neuromuscular diseases

National Marfan Foundation (NMF)

Annotation: The National Marfan Foundation (NMF) supports research on Marfan syndrome and related connective tissue disorders, provides information for affected families and physicians, and enables people with the syndrome and their families to share experiences, support one another, and improve their medical care. The foundation sponsors an annual conference. Publications include The Marfan Syndrome (5th ed.), The Marfan Syndrome: A Booklet for Teenagers, How John Was Unique (children's picture book), Marfan Syndrome: A Teacher's Booklet, various reprints of newspaper, magazine, and medical journal articles, a quarterly newsletter, "Connective Issues", Specialty brochures including one on Physical Avtivity and another on Pediatric Concerns, and a catalog. Available audiovisual materials include "How Do Your Genes Fit?", developed especially for use in middle schools, which explains genetic disorders, especially Marfan Syndrome; "The Heart of the Matter, a general informational video; and a CME accredited video, "Emergency Diagnosis and Treatment of Aortic Dissection."

Keywords: Connective tissue diseases, Marfan syndrome, Medical research, Support groups,

   

This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U02MC31613, MCH Advanced Education Policy, $3.5 M. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.